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#25356 09-08-2002 04:26 AM
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My husband has just completed 7 weeks of radiation and chemo at MDACC orlando branch. We are very happy with the care and treatments (DR'S were great) He still needs to see a surgeon to determine whether or not he must have his lymph nodes removed. We would really like to know what was the cause of this cancer. It is base of the tongue. He smoked as a teenager and up until he was in his late twenties or early thirties but has not used any tobacco since. We would like to explore the HPV connection. We have no knowledge of having HPV. The doctors say don't worry about what caused it--just get better. That is true to some degree but we think we owe it to others to learn the causes. Has anyone pursued this in depth??
Meredith

#25357 09-08-2002 07:23 AM
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hi Meredith-

This is Kim coming in under Dave's logo but we did ask similar questions about the HPV connection to the surgeons/researchers we have on team at Mass Eye & Ear/Mass General. They tell us that research is under way to look at genome markers for oral cancer but at present they can't be determined. Dave has been asked to participate in a Harvard School of Public Health study which currently has about 300+ subjects with oral cancer whose DNA(from saliva swab, blood, & a piece of tissue surgeons keep during surgery) will be studied to look for patterns etc. We asked if we could have access to the studys results which are supposed to be available in the next couple of years. I haven't had a chance to look at much of the data in the packet they gave us yet because we are preparing for Dave's surgery on 9/16 but will post more as I learn more.

On a personal note, Dave and I have been together since 1998 and I recently had two atypical PAP smear results which on repeat came back normal but my gyn suspected that Dave may carry HPV. You really can't test for that easily in men unless you are talking the genital kind and the man has an obvious lesion. But, Dave is 48 and has no risk factors for oral cancer either so we are wondering too...

Kim

Let me know if you want the contact numbers for the study-glad to supply.


*Stage III Right Tonsillar Ca. *Diagnosed Aug. 2002
*Surgery Sept.,Radiation Dec. 2002
*For everything else there's Mastercard.
#25358 09-08-2002 05:26 PM
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There is more than anecdotal evidence for the connection, and there are studies being conducted at cancer centers around the country in which oral SCC lesions are being sampled for HPV 16/18. SCC of the oral cavity and cervical cancer are essential the same cancer. The tissues of the cervix and of the oral environment are the same type of tissue. HPV 16/18 causes genetic changes which are the base cause of all cancers. Connecting the dots here is pretty easy. Please read the various articles in this web site regarding this, also the news article (in the news archives) re: the same and the study at Johns Hopkins, and use the search engine in the message board where there have been several postings containing information about HPV. There is a connection, and it is probably the answer to why a disease, which has historically been a disease of older people who have had a significant number of years of tobacco use, now has increasing numbers of people in their thirties who are non smokers joining the ranks. When you get your PAP they can, at the same time, test you for HPV 16/18 for about 40$. My wife was positive, and as a non-smoking oral cancer survivor, it is likely that I am too since HPV is sexually transmitted. Finding out after the fact is of little value to the oral cancer survivor, but it is extremely important to the partner, since if female, they are at a very high risk of developing cervical cancer. HPV 16/18 causes 95% of all cervical cancers. If you are positive, start getting your PAP every 6 months instead of annually. Early diagnosis is your best chance of survival.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
#25359 09-09-2002 06:04 AM
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Brian's advice here is very well taken. I have had a couple of coloposcopies which have come back negative (good news) for HPV but I'm still not convinced the connection isn't there..I would echo his remarks about partners being tested. I am now getting PAPS every 4-6months for just the reasons he outlines and would urge others to do the same.

Kim


kcdc
Wife of Dave,diagnosed with Stage III Tonsillar SCC,August '02
Modified radical neck dissection followed by radiation therapy
'There is glory and radiance in the darkness and to see we have only to look"
#25360 09-10-2002 08:34 AM
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I appreciate all the imput. We are seeing the surgeon tomorrow and interestingly one of his area's of expertise is HPV relation to oral cancer. Kim, I would like the name and address of the study.
Thanks again
Meredith

#25361 09-10-2002 12:33 PM
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As mentioned before look at the news article on the Johns Hopkins study.

http://www.oralcancerfoundation.org/news


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.

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